top of page
RDSA-Web-UpcomingEvents-Banner-55.jpg

upcoming
events

  • Fibromyalgia Awareness Month
    Fibromyalgia Awareness Month
    Mon, 05 May
    Online Platforms
    05 May 2025, 10:00 – 31 May 2025, 23:50
    Online Platforms
    Raise awareness and advocate for fibromyalgia with our friends, family, co-workers, community neighbourhoods, and Congressional leaders. Take part to share the facts, and make a difference for all those impacted by fibromyalgia.
  • Cystic Fibrosis Awareness Month
    Cystic Fibrosis Awareness Month
    Mon, 05 May
    Social Media Platforms
    05 May 2025, 10:00 – 31 May 2025, 23:50
    Social Media Platforms
    May is Cystic Fibrosis Awareness Month. Cystic Fibrosis (CF) is a rare genetic condition that makes it hard to breathe and affects many parts of the body. In South Africa, too many families face this invisible struggle without the awareness or support they deserve.
  • Lupus Awareness Month JHB Event
    Lupus Awareness Month JHB Event
    Sat, 31 May
    31 May 2025, 14:00 – 16:00
    Edenvale, 101 Edward Dr, Dowerglen, Edenvale, 1609, South Africa
    And this month and on #WorldLupusDay, we’re raising our voices for those living with this invisible but life-altering condition.
  • Rett X Conference – Johannesburg
    Rett X Conference – Johannesburg
    Sat, 21 Jun
    21 Jun 2025, 08:00 – 18:00
    Eagles Nest, 373 Leslie Ave, Fourways, 2055, South Africa
    At the Rett X conference a range of speakers are invited to give talks about relevant topics about Rett syndrome. The aid is to educate healthcare providers and families affected by RS to improve the care given to (our) girls.
  • 947 Ride Joburg - Kids Races 2025
    947 Ride Joburg - Kids Races 2025
    Sat, 08 Nov
    08 Nov 2025, 05:00 – 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Saturday and Sunday 8-9 November 2025, FNB Stadium, Johannesburg.
  • 947 Ride Joburg - Mountain Bike Races 2025
    947 Ride Joburg - Mountain Bike Races 2025
    08 Nov 2025, 05:00 – 09 Nov 2025, 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Saturday and Sunday 8-9 November 2025, FNB Stadium, Johannesburg.
  • 947 Ride Joburg - Road Races 2025
    947 Ride Joburg - Road Races 2025
    Sun, 16 Nov
    16 Nov 2025, 05:00 – 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Sunday 16 November 2025, FNB Stadium, Johannesburg.

At Rare Diseases South Africa we place great value and emphasis on creating awareness, educating and sharing best practices amongst our network, our patients and society at large. We host a number of events throughout the year – some physical, some virtual and some hybrid – with the intention of ensuring that those we touch leave the session empowered with greater knowledge, empathy and understanding of rare diseases and congenital birth defects.

 

We also host regular community events and support our patient events as our priority is to ensure that no one affected by rare diseases has to walk this journey alone. Although individually rare, if we stand united, collectively we are powerful.

upcoming external fundraisers
  • Fibromyalgia Awareness Month
    Fibromyalgia Awareness Month
    Mon, 05 May
    Online Platforms
    05 May 2025, 10:00 – 31 May 2025, 23:50
    Online Platforms
    Raise awareness and advocate for fibromyalgia with our friends, family, co-workers, community neighbourhoods, and Congressional leaders. Take part to share the facts, and make a difference for all those impacted by fibromyalgia.
  • Cystic Fibrosis Awareness Month
    Cystic Fibrosis Awareness Month
    Mon, 05 May
    Social Media Platforms
    05 May 2025, 10:00 – 31 May 2025, 23:50
    Social Media Platforms
    May is Cystic Fibrosis Awareness Month. Cystic Fibrosis (CF) is a rare genetic condition that makes it hard to breathe and affects many parts of the body. In South Africa, too many families face this invisible struggle without the awareness or support they deserve.
  • Lupus Awareness Month JHB Event
    Lupus Awareness Month JHB Event
    31 May 2025, 14:00 – 16:00
    Edenvale, 101 Edward Dr, Dowerglen, Edenvale, 1609, South Africa
    And this month and on #WorldLupusDay, we’re raising our voices for those living with this invisible but life-altering condition.
  • Rett X Conference – Johannesburg
    Rett X Conference – Johannesburg
    21 Jun 2025, 08:00 – 18:00
    Eagles Nest, 373 Leslie Ave, Fourways, 2055, South Africa
    At the Rett X conference a range of speakers are invited to give talks about relevant topics about Rett syndrome. The aid is to educate healthcare providers and families affected by RS to improve the care given to (our) girls.
  • 947 Ride Joburg - Kids Races 2025
    947 Ride Joburg - Kids Races 2025
    08 Nov 2025, 05:00 – 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Saturday and Sunday 8-9 November 2025, FNB Stadium, Johannesburg.
  • 947 Ride Joburg - Mountain Bike Races 2025
    947 Ride Joburg - Mountain Bike Races 2025
    08 Nov 2025, 05:00 – 09 Nov 2025, 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Saturday and Sunday 8-9 November 2025, FNB Stadium, Johannesburg.
  • 947 Ride Joburg - Road Races 2025
    947 Ride Joburg - Road Races 2025
    16 Nov 2025, 05:00 – 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Sunday 16 November 2025, FNB Stadium, Johannesburg.

patient events

If you’d like to register for or participate in patient specific events hosted by family, friends and/or support groups, contact us.

  • Lupus Awareness Month JHB Event
    Lupus Awareness Month JHB Event
    31 May 2025, 14:00 – 16:00
    Edenvale, 101 Edward Dr, Dowerglen, Edenvale, 1609, South Africa
    And this month and on #WorldLupusDay, we’re raising our voices for those living with this invisible but life-altering condition.
  • Rett X Conference – Johannesburg
    Rett X Conference – Johannesburg
    21 Jun 2025, 08:00 – 18:00
    Eagles Nest, 373 Leslie Ave, Fourways, 2055, South Africa
    At the Rett X conference a range of speakers are invited to give talks about relevant topics about Rett syndrome. The aid is to educate healthcare providers and families affected by RS to improve the care given to (our) girls.

ACTIVities

Help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community by registering to be a RARE ACTIVist.

Whether you participate in one of our featured events or a marathon, triathlon, or bike ride of your own, by fundraising for Rare Diseases South Africa NPC you’re helping us empower patients through improved advocacy, navigation and community engagement.​ 

#Run4Rare #Swim4Sadie or #Ride4Rare with our Rare ACTIVist team and use your mobility to the benefit of those without it.

RDSA-CharityChampions-Image2.png

No events at the moment

community events

Rare Diseases SA frequently hosts events in support of various conditions and or rare disease related causes. Contact us or follow us on Facebook for regular updates. 

  • Fibromyalgia Awareness Month
    Fibromyalgia Awareness Month
    Mon, 05 May
    Online Platforms
    05 May 2025, 10:00 – 31 May 2025, 23:50
    Online Platforms
    Raise awareness and advocate for fibromyalgia with our friends, family, co-workers, community neighbourhoods, and Congressional leaders. Take part to share the facts, and make a difference for all those impacted by fibromyalgia.
  • Cystic Fibrosis Awareness Month
    Cystic Fibrosis Awareness Month
    Mon, 05 May
    Social Media Platforms
    05 May 2025, 10:00 – 31 May 2025, 23:50
    Social Media Platforms
    May is Cystic Fibrosis Awareness Month. Cystic Fibrosis (CF) is a rare genetic condition that makes it hard to breathe and affects many parts of the body. In South Africa, too many families face this invisible struggle without the awareness or support they deserve.
  • Lupus Awareness Month JHB Event
    Lupus Awareness Month JHB Event
    31 May 2025, 14:00 – 16:00
    Edenvale, 101 Edward Dr, Dowerglen, Edenvale, 1609, South Africa
    And this month and on #WorldLupusDay, we’re raising our voices for those living with this invisible but life-altering condition.
  • Rett X Conference – Johannesburg
    Rett X Conference – Johannesburg
    21 Jun 2025, 08:00 – 18:00
    Eagles Nest, 373 Leslie Ave, Fourways, 2055, South Africa
    At the Rett X conference a range of speakers are invited to give talks about relevant topics about Rett syndrome. The aid is to educate healthcare providers and families affected by RS to improve the care given to (our) girls.
  • 947 Ride Joburg - Kids Races 2025
    947 Ride Joburg - Kids Races 2025
    08 Nov 2025, 05:00 – 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Saturday and Sunday 8-9 November 2025, FNB Stadium, Johannesburg.
  • 947 Ride Joburg - Mountain Bike Races 2025
    947 Ride Joburg - Mountain Bike Races 2025
    08 Nov 2025, 05:00 – 09 Nov 2025, 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Saturday and Sunday 8-9 November 2025, FNB Stadium, Johannesburg.
  • 947 Ride Joburg - Road Races 2025
    947 Ride Joburg - Road Races 2025
    16 Nov 2025, 05:00 – 12:00
    Johannesburg, Soccer City Ave, Nasrec, Johannesburg, 2147, South Africa
    Ride 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Sunday 16 November 2025, FNB Stadium, Johannesburg.

webinars

RDSA-Webinars.gif

We regularly partner with various organisations, brands and specialists who are able to provide insightful content and informative feedback on relevant issues, conditions, treatment and regulation changes which may be of interest.

 

Register for an upcoming webinar below, follow our Facebook page for updates and webinar details or enquire about hosting a webinar of your own with us. 

No events at the moment

conferences

Rare Diseases SA not only hosts conferences (including RareX) but regularly participates in, facilitates and partners in a number of relevant conferences and exhibitions around the world. 

  • Rett X Conference – Johannesburg
    Rett X Conference – Johannesburg
    21 Jun 2025, 08:00 – 18:00
    Eagles Nest, 373 Leslie Ave, Fourways, 2055, South Africa
    At the Rett X conference a range of speakers are invited to give talks about relevant topics about Rett syndrome. The aid is to educate healthcare providers and families affected by RS to improve the care given to (our) girls.

awareness months

Awareness months serve to draw attention to and create awareness of illnesses and conditions.

 

With more than 7000 known rare diseases there are a significant number of awareness days throughout the year. If you feel we have missed one, please let us know.

upcoming awareness months

  • Fibromyalgia Awareness Month
    Fibromyalgia Awareness Month
    Mon, 05 May
    Online Platforms
    05 May 2025, 10:00 – 31 May 2025, 23:50
    Online Platforms
    Raise awareness and advocate for fibromyalgia with our friends, family, co-workers, community neighbourhoods, and Congressional leaders. Take part to share the facts, and make a difference for all those impacted by fibromyalgia.
  • Cystic Fibrosis Awareness Month
    Cystic Fibrosis Awareness Month
    Mon, 05 May
    Social Media Platforms
    05 May 2025, 10:00 – 31 May 2025, 23:50
    Social Media Platforms
    May is Cystic Fibrosis Awareness Month. Cystic Fibrosis (CF) is a rare genetic condition that makes it hard to breathe and affects many parts of the body. In South Africa, too many families face this invisible struggle without the awareness or support they deserve.
  • Lupus Awareness Month JHB Event
    Lupus Awareness Month JHB Event
    31 May 2025, 14:00 – 16:00
    Edenvale, 101 Edward Dr, Dowerglen, Edenvale, 1609, South Africa
    And this month and on #WorldLupusDay, we’re raising our voices for those living with this invisible but life-altering condition.
  • Rett X Conference – Johannesburg
    Rett X Conference – Johannesburg
    21 Jun 2025, 08:00 – 18:00
    Eagles Nest, 373 Leslie Ave, Fourways, 2055, South Africa
    At the Rett X conference a range of speakers are invited to give talks about relevant topics about Rett syndrome. The aid is to educate healthcare providers and families affected by RS to improve the care given to (our) girls.
RDSA-Logo-Colour-RGB-HR.png

Physical Address

The Station, 63 Peter Place, Bryanston, Sandton, 2021

Follow us on

  • Facebook
  • Instagram
  • Twitter
  • YouTube
  • LinkedIn

NPO: 120-991  NPC: 2016/071131/08  PBO: 930060119

© 2025  Rare Diseases South Africa NPC | Rights reserved

RDSA Privacy Policy 

Rare Diseases South Africa

NPO 120-991

The Station, 63 Peter Place, Bryanston, Sandton, 2021

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

bottom of page